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I have RA and am considering giving up work. Need advice.

Hello everybody.

I've worked in a primary school for 13 years and up until 2010 I enjoyed it. I was diagnosed with Rheumatoid Arthritis then, although I waited years before getting a diagnosis.

My problem is, in my head I can do everything I did prior to 2010, but physically, the pain prevents me from doing it now.

My hours are 8:50 to 15:00 but I struggle with getting up and feeling able to perform simple tasks. Fatigue is a big issue for me as I find it difficult sleeping at the best of times but we have a problem with noisy neighbours at the moment which isn't helping. (The appropriate agencies are involved trying to prosecute, another story!.)

While I need the money as I'm the sole earner, I also need to have a break.

I don't know what I need to do if I want to give up work as regards benefits etc. I do receive DLA at the moment but I don't know how long for.

All I want is an option for giving up or reducing hours at work that won't see me penniless.

If anyone has any advice on this matter I would be truly grateful.

Kind regards,

Chris
:)
Everything happens for a reason

Comments

  • arfaitisarfaitis Posts: 155
    edited 30. Nov -1, 00:00
    Don't know what to suggest here Chris, you say you have bad pain, well you need a good chat to your rheumy to see if they can do anything more for your pain.
    Until your pain is under control, it will be hard to adjust, but I am sure you will find your rheumy is sympathetic.
    You say you can do everything prior to 2010, so really if you can get your pain under control you could possibly still keep your job, but only you know whether you can do it.
    A job is so important in this world, but your health is more important, living without a good income can be hard, you would probably have to make some cutbacks, but once again only you will know that.
    We are all different Chris, so what suits others might not suit you.
    Good luck may you soon get pain free, and sort your job.

    Arfa
  • dibdabdibdab Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Chris, feeling for you. I too work in primary school and have RA. Does your head know about your diagnosis? If so she has a responsibility under equality law to make reasonable adjustments. I reduced my working hours to 3 days a week 2 years ago when I was really struggling, also I don't do morning playground duty when it's cold, and my job share does PE/games lessons. School provided voice activated software for my laptop, and got me a better more supportive chair for the classroom. You could ask to talk to Occ Health about reasonable adjustments.
    Having said all that I plan to take early retirement next Easter when I reach 55 because the fatigue is getting too much.
    Hope things work out for you.

    Deb x
  • frogmellafrogmella Posts: 1,115
    edited 30. Nov -1, 00:00
    I just wanted to reassure you re being penniless. I reduced my hours a few years ago, due to family circumstances rather than arther. I went half time. Due to tax and other deductions my take home pay certainly didn't halve, more like I lost about a third. If you can get your hours reduced you won't feel quite the hit you imagine.

    Like dibdab says your employer do have a responsibility to make reasonable adjustments - try asking and see what happens.
  • baarmychrisbaarmychris Posts: 9
    edited 30. Nov -1, 00:00
    Hi Arfur, Deb and Frogmella,

    Many thanks for your kind replies. At least I have people to ask who knows what I'm going through.

    I am currently taking Methotraxate, Sulfasalazine and, now, Cimzia for my arthritis. I started Cimzia in June and, so far, I haven't noticed a difference in a reduction of pain. I know it takes a while for it to take effect so will persevere. I have been referred to a physiotherapist again to undergo hydrotherapy as it could be that my joints still have residue that needs to be shifted. (Or words to that effect, ha)

    The head teacher at my school does know about my condition. I've had a visit from Occupational Health and she advised me on adaptations for me to aid me in my work. I have a chair that supports my back and it has helped. The head has told me to ask for anything I need which is great but he's the only one that I feel supports me apart from my work mates.

    Others (there are 4 people who do this) occasionally make comments about disabled people and how they think they should give up work in the staff room. They also say things like, 'these benefit cheats will get caught one day. Especially the ones who are meant to have a disability but work.'

    You can imagine how that makes me feel especially as I receive DLA but I manage to get to work. The problem with having RA is it is invisible to others. They can't feel your pain but they are truly ignorant.

    I don't say anything because 2 of them are senior members of staff and are governors so I keep quiet. It's just left me thinking, 'maybe I should give up work.'

    To be honest, the fatigue is the worst thing. I am an emotional wreck most days but I hide behind my sense of humour.

    I have to work because my partner is finding it difficult to get a job and I'm the only one who brings in any money. I have made many cut backs such as not being able to buy any clothes for the last 2 years, no holidays, going out etc. I have got used to budgeting on my low income but if I gave up work that would be worse unless there was a way around it.

    Oh I am so sorry for off loading here but I could tell I'm in good company and I'm sure you understand what I'm going through.

    Thank you for listening. It actually helped just writing my thoughts down.

    Chris
    Everything happens for a reason
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, rest assured you are talking to the initiated on here when it comes to arthritis and dealing with life. I'm self-employed and am very fortunate in that I can tailor things to suit me (my boss is very understanding :wink: ) but the amount of work I can do is lessening term by term (I'm a tutor for dyslexics). I cannot help on the work front - maybe the CAB could give you some help and advice - but please come and talk to us on LWA or join in some of the fun on CC. We do know what it's like, especially the fatigue, and we are a supportive bunch. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmellafrogmella Posts: 1,115
    edited 30. Nov -1, 00:00
    Those people at your school making those stupid comments are just ignorant. All you can do is ignore them (difficult I know and I do feel a bit like the pot calling the kettle black here, because I take these things personally too) and rise above it. They would still moan about people not pulling their weight should they leave work etc. They just don't get it!

    I can totally empathise with the fatigue thing. I only have spinal OA not RA but I am exhausted after my small amount at work.

    I know how much it helps just writing on here, it clarifies your thoughts a bit and everyone is so nice on here. Please feel free to off load, that is the point really.

    :)
  • maria09maria09 Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi Chris
    We all know how difficult it is to have the dreaded conditon
    Mines OA Ive had for 9yrs Ive had lots of problems with work done the usual reduced my hours & finally reduced them to 16hrs a week
    My manager has made my life & others with poor sickness records HELL!
    & I work in healthcare so you would think they would understand! But no!
    I have worked for 30yrs the last 3 have been a nightmare & Ive only just now realised enough is enough I cant work 8hrs a day on my feet constantly working at such a fast pace so 6months ago I decided to go down the ill health route which at the minute is still ongoing
    Maybe you could reduce your hours gradually
    It would help you if you spoke to your Head & ask if there is anyone you could job share
    At the end of the day only you can decide whats best for you
    It is so hard to give up your professsion the one you worked hard to get
    Im lucky as my husband is still working but i can not deny times are tough but at the end of the day my health is more important so I feel I have made the right choice
    Take care
    Be strong
    Maria
  • creakybonescreakybones Posts: 31
    edited 30. Nov -1, 00:00
    Hi Chris
    You will see from some of my posts that i was in a smilar position. I have developed enteropathich arthirits this year - i also have chrons disease and various other internal problems. I have struggled with work for years but the arthritis was the final straw. I have been off sick since april. Last week I lost my job - so dspite being 'protected' by the equality act my employment was terminated based on an occ health report. Now this may all be in my favour and may work out ok as they may release my pension. I say may as its not guaranteed and this is a worrying time for me. My employers have always been very supportive and i cant complain but am worried that if they do not release my pension i will be in a bad place financially. I wish I knew before my contract was terminated that I would be getting a pension but they are separate processes. Just want you to be aware of this as it sounds like you work for local government too. In addition i am surprised at my reaction to finishing - when they told me i cried - not with relief - with regret as I liked my job but I couldnt cope anymore. Like you - mornings were a problem as in addition to the pain I dont sleep well and on top of that I have a lot of pelvic / bowel problems - it is probably the best decision for me but until I know where i stand with my pension - it is also very worrying time. Whatever you decide I wish you well - if you want any more info pls pm me.
  • baarmychrisbaarmychris Posts: 9
    edited 30. Nov -1, 00:00
    Hi to all of you who took the time to reply to my moaning post.

    I have taken all your advice on board and I'm so glad I came on and took the plunge with my difficulties. Everyone has said something positive for me to take on board. I can see that I'm not the only one in my situation and it's heart-warming to realise that, even with your own problems, you are still prepared to listen to mine. Thank you so much.

    I feel much better knowing that whenever I have a bad day all I have to do is come on here. I've never felt so welcomed. I have some friends at work whom I sometimes have a slight niggle to and they listen but they can't emphasize with the pain I suffer. On here, it's great to know that you do know and I know how you feel too.

    If I can help anyone else as much as you have helped for me then feel free to ask.

    You are amazing. :)
    Everything happens for a reason
  • nicetomeetunicetomeetu Posts: 63
    edited 30. Nov -1, 00:00
    Hi Chris,

    I hope you had a nice weekend.

    Whatever decision you make, take your time and don't do anything in haste. You sound like a great teacher, who has been dedicated and loyal to her job, as you have been doing it for 13 years.

    I understand how reducing your hours could help you, especially as you suffer from fatigue. I have OA and only recently been suffering with fatigue, I have had to sign off job seekers and apply for ESA because of it. Even if gives me a little bit of respite, while they investigate why I am so exhausted.

    Don't let the staff room chitter chatters make you feel guilty DLA is not a means tested benefit as far as I am aware, whether people are on any other benefit or are working it does not affect your right to entitlement. Therefore, the powers that be are aware that some people on this benefit may be working too. You do not have to be housebound to claim DLA. Those who judge you, don't know how difficult it must be for you to venture out to work each day. Especially in the morning when your joints must be stiff and painful, then you have to fight the fatigue, possibly force yourself to eat a substantial breakfast whether you are hungry or not, as many arthritis medications can only be taken with food to avoid stomach upsets and ulcers etc.

    All the best, and I hope you can come to some sort of agreement to reduce your working hours if it is getting a bit much for you. I am proud of you and you remember to hold your head up high.

    Hugs
    (((((((((())))))))))) :)
  • karenzakarenza Posts: 7
    edited 30. Nov -1, 00:00
    Hi could you tell me if you had to attend a Tribunal to get DLA
    I have been turned down twice and now have to go to a Tribunal
    I'm crippled with Oestioarthritus in 90%
    Of my body
    And life is a struggle
    Work has become terrible to cope with.
    Thanks any help welcomed.
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